Latest update as of Mar 01, 2023

  • Appointment time

    Today is the big day for genetics, we go over a deeper plan for her care, she sometimes gets nervous during these visits so please send up lots of prayer! Go ZZ!!

About this fundraiser

A zebra in the medical field is a patient with a rare disease and Zanerra fits that description well, it's fitting because she loves animals and plans to be a vet when she's older! She is such a beautiful, strong 9 year old little girl, she is the youngest girl out of 4 children, who is waiting for her chance to start playing basketball again. Last year she had started complaining about headaches, and pains in her bones with activity. With me having familiarity with aches and pains and being told that I have a genetic disorder I took my daughter in to be evaluated by her PCP. I was hoping by getting her evaluated the doctors would set her up with the services that I receive for my rare genetic condition Ehlers Danlos Syndrome. 

The PCP referred us to the genetics department and in December 2022 we began her on therapy treatments in preparation of the blood test results, with the understanding that whatever the test may show, these therapy treatments will still strengthen and straighten her curved lumbar spine and her hypermobility that she has throughout her whole body, they will further explore the consistent headaches as the results come in. Thankfully the ability to do treatments in office have been covered by insurance, but we've been told we need to do them at home to enhance her improvement and unfortunately, we do not have the equipment to do the treatment at home and the insurance does not cover it. While my husband and I chewed on that information we were hit with even more news.

We were not prepared for the results we received on February 15. At 10am Wednesday morning we got a call from genetics. They stated she has a inherited change on her COL4A1 gene, she further stated that unfortunately the mutation has not been studied and they are unaware how it truly affects her body. We know that at this time it has affected her joints, ligaments, heart, and could be the reason for her headaches due to the little research they know about the gene and how it causes issues in the brain. Having a history of aneurysms in my family and getting other opinions we are led to seek after a full body holistic approach. Your donations will assist in paying for the Naturopathic doctor, blood tests, all supplements, as well as the equipment for her at home therapy treatments. I thank you all for coming along this journey with us and we will continue to keep you updated as she grows and things change!

Organized by

Jona Reyes

East Pittsburgh, PA, USA